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Old 12-22-2004, 02:06 PM   #1
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12/22 Update on our TTTS boys

Another great visit. We couldn't have asked for better news. They found a pocket of fluid 4cm for baby B (a.k.a. Jack, a.k.a. the donor baby) and a pocket 5cm for baby A (a.k.a. Max, a.k.a. the recipient baby). These are REALLY good numbers- completely normal.

We have every reason to just be hopeful and happy from here on out. There is still a risk that it could swing back to being uneven, but the doctor I saw today said we should be really happy with this news. Generally, he said, if things even out and stay that way until around 26 weeks, it is rare for them to get bad again. Of course, anything can happen, and we need to keep that in the back of our minds, but for now we just couldn't be happier. And of course with each week we get through with no problems and no drainage, the risk gets a little bit smaller.

I met a friend for lunch today and we started planning the boys' baby shower for January 22!!! It's so wonderful to feel like we are having a normal healthy pregnancy. This is the best I've felt in weeks!

The doctor also spent some time talking to me about nutrition and when they will want to deliver the babies. This is the first time in 5 weeks and about 10 doctor appointments that anyone has said anything to me about the long term. The mood has always been "let's see how things are next week." The mere fact that we are talking about delivering these babies gives me reason to be hopeful. He told me that no matter what, they won't let me go past 36 weeks. Even though they will still be premature, the risk to monochorionic twins past 36 weeks seems to increase. There can be a sudden occurance of one twin shunting blood away from the other that can lead very quickly to the death of the babies, even if there had been no indications of TTTS in the past. The risk of delivering early (at 36 weeks) seems to be less than the risk of the other problems. So now the absolute latest they will arrive is March 15.

In the book the Godfather, Vito Corleone dies (much like in the movie) playing with his grandson in his garden. Only in the book, he mutters the words "Life is so sweet," just before he passes. (I think I have the quotation right- at least the sentiment is right.) All day since getting my good news I keep thinking of that part of the book. I just feel like life has been so good to us lately, there almost isn't room for all the joy I feel today.

I hope everyone has a wonderful holiday, and as always, thanks for reading about us and checking up on us!
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Old 12-22-2004, 02:39 PM   #2
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Re: 12/22 Update on our TTTS boys

I asked this in your other thread and don't think you saw it. Will the doctors deliver the babies earlier than 36 weeks if they think it's necessary? If they do, I can give you some advice about the NICU. Been there.

 
Old 12-22-2004, 02:41 PM   #3
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Re: 12/22 Update on our TTTS boys

Also, I know this is none of my business, but I feel like I'm on a mission to let every pregnant woman know that she should breastfeed her kids. they need your immunity and the hospitals don't help, especially if the baby's early. Do yourself and the babies a favor, call a lactation consultant and talk about what to do. If your kids come early, the milk will have to be pumped and I really hope you do some reading about the benefits. Good Luck

 
Old 12-22-2004, 04:47 PM   #4
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Re: 12/22 Update on our TTTS boys

If we get to the point that the doctors think they need to deliver the babies for the safety of one or both of them they will do so. I intend to breastfeed. I think it really is beneficial. Thankfully, the perinatologists, nurses, and midwives in this practice are all very supportive of this choice, and seem willing to help in any way possible.

After the holidays, I plan on buying a book about what to expect from the NICU, and parenting and breastfeeding premies and twins. Here's my short list:
Mothering Multiples: Breastfeeding & Caring for Twins or More
Your Premature Baby: The First Five Years
Breast Feeding Your Premature Baby
Kangaroo Care : The Best You Can Do to Help Your Preterm Infant
Your Premature Baby and Child: Helpful Answers and Advice for Parents
Preemies : The Essential Guide for Parents of Premature Babies

Do you have any experience with any of these books, or do you recommend any above the others?
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Old 12-22-2004, 05:52 PM   #5
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Re: 12/22 Update on our TTTS boys

march 15 is my b-day. great day to be born!
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Old 12-22-2004, 05:57 PM   #6
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Re: 12/22 Update on our TTTS boys

Great news again! I am so happy for you!!!! March will come faster than you think. Take care. My birthday is March 19th, it's a great month to be born.

 
Old 12-23-2004, 08:09 AM   #7
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Re: 12/22 Update on our TTTS boys

I am so happy for you! I have been looking forward to another positive update this week. March will be here before you know it and so will your beautiful boys! So, I guess you're no longer an April mom, but feel free to continue to keep us updated in the April thread.

 
Old 12-23-2004, 09:29 AM   #8
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Re: 12/22 Update on our TTTS boys

Personally, I was only able to pump breastmilk for 2 months and it dried up. I had a baby pass away in intensive care and then when my next baby was born premature, I had a hard time going in there. The nurses told me I needed to wait for my milk to come in. This was incorrect information. So, when I got home after a week, I started pumping, thinking this would keep the supply up. It doesn't. I only pumped when the baby was hungry. After 2 months it disappeared. More maddening is the fact that my sister in law, who breastfed each of her daughters for one year, never opened her mouth even though she knew I was struggling and couldn't understand why I didn't have any milk. I have never really forgiven her for this.
So, I try to help people learn from my experience. The books are helpful, but there is nothing like hands on experience. The NICU can be very intimidating and if the babies are there, you will not see many women breastfeeding. They pass out bottles of formula like it's going out of style. So, you have to take charge of the nurses and tell them no formula. When you know the babies are coming, you or your husband arrange through the social worker at the hospital to have a breast pump and parts delivered to you. The parts will need to be sterilized.

 
Old 12-23-2004, 09:34 AM   #9
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Re: 12/22 Update on our TTTS boys

Some hospitals have pumps you can use, but the nurses I encountered offered no encouragement. So, you take action by pumping each breast every three hours for at least 20 minutes. You start pumping as soon as the babies are born. At first, nothing may come out, only drops. This is okay and normal. Bottle up the drops because each is precious. Then, when the milk starts to flow, keep pumping. You can then attempt the breastfeeding. You may find the babies can breastfeed. Sometimes preemies can't latch on to the breast and need to be fed through the bottle, but if they can, ask for help. Some hospitals have lactation consultants there, but I don't know if they can come in the NICU. While the babies are in the NICU, no one is allowed in except family. So, please establish a relationship with a lactation consultant now, so you're not intimidated when you go in. When the babies come home, the lactation consultant will come to your home and help you feed them.

 
Old 12-23-2004, 09:39 AM   #10
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Re: 12/22 Update on our TTTS boys

Hopefully, your babies will be born full term and then the lactation consultant can help you right away. Don't fall into the trap of thinking that you don't have enough milk or your breasts aren't right or anything like that. It is very rare for a woman not to be able to breastfeed. It's mind over matter. Positive thinking about it is very important. Also, let your husband know that this is your intention so that he can get used to the idea of his wife being a human bottle. It's hard for some men. I highly recommend even going to a breastfeeding support group ( look in phone book - I don't think I'm allowed to promote the group I'm thinking of in this site), and watching other women breastfeed and talking to them. Do this even before you have the babies. You need to get used to the sight of your bare breast as a source of invaluable food for your babies and not as something you feel shameful of. Trust me, take my advice. If you are well prepared you will succeed. Also, expect some people to try and talk you out of breastfeeding because they didn't do it. It happened to me. That's why a breastfeeding support group is great. Best of luck and please, listen to me. I've been there.

 
Old 12-23-2004, 09:51 PM   #11
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Re: 12/22 Update on our TTTS boys

Mary,

It sounds like you have been through a lot with your two babies in the NICU. I can't even imagine how hard it would be to lose one, only to have another born so premature. It sounds like it has really had an impact on your life.

I really do appreciate all your advice. I feel quite strongly that no matter when these babies arrive, breastmilk is best for us, and I will do my best to get it to them any way I can. I realize you've had some tough times, and you want others to benefit from the hardships you've experienced. I think it takes a strong person and a very generous spirit to be able to share the stories and advice you've shared. Some of your posts, however, come across as a bit preachy, and now in two threads I feel like you've rained on my parade.

Right now, I am doing my best to take things one day at a time. I try to rejoice when we get good news, and worry when we get bad news. This doesn't mean that one good appointment makes me turn a blind eye to the fact that we could still lose our sons. I know this is a possibility. But among the things I can control to try to make things better for my boys is to decrease my worries and anxieties. When I post about how happy I am to have reached a milestone or to have had a positive doctor visit, I really don't want to see posts that imply "But watch out, they could still die!"

Please keep in mind that this is a very stressful time for me, and to constantly be reminded of the worst case scenario makes me feel awful.

I certainly wish you nothing but the best, and I hope my saying this doesn't mean you will never respond to me again or anything like that. I'm just not sure you realize that twice now you have responded to my "celebration" threads by reminding me what could go wrong, and what you think I should do in case things do go wrong.

I really do appreciate all your advice, and I thank you for sharing such personal and tragic stories. I think it's great that you are using your loss to try to help others. I hope you and your family have a wonderful holiday!
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Identical boys, Max and Jack born 3/19/05!

 
Old 12-24-2004, 10:10 AM   #12
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Re: 12/22 Update on our TTTS boys

Sorry, I don't mean to rain on your parade at all. I will pray for you and your kids today when I go to church. I worry alot. I just, I think because of my situation, I aways am aware of what could happen, but you are at a milestone now and I'm very happy for you. I too, when I reached about 25 weeks, was able to relax with my daughter because I knew my cerclage was working. Be careful not to strain too much, don't do anything like lifting heavy objects or lifting alot of groceries. And please do actually talk to a lactation consultant before babies are born. From the bottom of my heart, I mean this. I say this, and I told you why, that sometimes women can feel strangely inadequate when they are looking at their newborns and there is so much pressure around to just shove the formula in the babies mouths. The peer pressure to bottle feed is intense. By going to a breastfeeding group meeting before babies are born and getting over the self consciousness aspect, you will succeed at breastfeeding. It is mind over matter. Don't even think about not having enough milk, just rejoice in it. I hope you have a wonderful Christmas.

 
Old 12-24-2004, 12:44 PM   #13
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Re: 12/22 Update on our TTTS boys

hi lawgirl, just wanted to add a little happines to your day....

i live in the county of Ohio that has the highest premature birth risk in all the state.
my daughter was born at 36.6 weeks, she was perfectly healthy and we both went home the next day....there is a GOOD chance that even if your little ones do came a little soon they wont be in the NICU but rather in your arms.
a woman who lives around me had at least 2 of her children at 36 weeks....both healthy.
my friend delivered her baby boy at about 37 weeks....went home within a few days of having him.

and with twins 38 weeks is considered term (as i am sure you know) so them even coming at 34 weeks (or even a little sooner than that) i bet wont be any big deal

i just read a story in one of my magazines about a woman whos baby girl was born at 24 weeks and and now is a happy little girl!

and also on tv i heard the other day about what they are calling the mirical baby who was only 10 oz at birth and lived!!!!! (it was a baby girl....that blew my mind!)

okay sorry i got so chatty.....i just know when i was pregnant with my daughter i had a few instances when i thought i might be having early labor signs and i wanted to read about every baby who was born early and made it....figured you would like to too

Merry Christmas
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Old 12-24-2004, 05:01 PM   #14
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Re: 12/22 Update on our TTTS boys

You're right. 36+ is considered full term. Most of these kids are just fine. Mine was 35 1/2, so they needed to keep her for a week.

 
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